Finding GiGi’s Playhouse

by Carol Tyukody (Jason’s Mom)

The atmosphere was festive. Decorations in place.  Food just right.  And the D.J.’s tunes had everyone on their feet.  All our friends and family were gathered at the Hillsborough Firehouse for a rockin’ party to mark a very special occasion: our Jason’s 40^th birthday!

There I stood among the festivities… taking it all in, reflecting on how far Jason had come, and also how much had changed in the last 40 years for people with Down syndrome. I couldn’t help but think back to 40 years ago when Jason came flying into the world three weeks early with no time for an epidural. Another precious boy for our family!

When we learned that Jason had Down syndrome, we were so scared about all we didn’t know or understand. The one thing my husband was insistent about was this: he didn’t want anyone feeling sorry for us.  I told all family and friends, “Come visit us with joy in your hearts or don’t come at all, for a special child has come into our family.”

And I had specific instructions for my husband too. “When you walk that baby down the hall back to the nursery,” I told him, “hold your head up high with pride!”

Well, let me just say that Jason has had us holding our heads high in pride ever since that very first day.

The initial days…

Jason on vacation with his parents Andy & Carol.

Post-partum hospital stays were longer back then. So a couple days after the delivery, my pediatrician came into my room and asked to look at my ears. Not only were Jason’s ears small and low set, but his nose seemed small, he had a crease on his palms, and there was a fold on the back of his neck. There was another concern: Jason didn’t cry when he was circumcised.

The next morning, another doctor—one I nicknamed “Doctor Slam Bam Thank You Ma’am” for his crass demeanor—sat on the edge of my bed.  “I heard your baby has Down syndrome,” he said bluntly.  “Do you want a tranquilizer?”

I did not want a tranquilizer; I needed a clear head. My husband and I were overwhelmed with all that we needed to learn. I remember asking the nurses for any literature on Down syndrome; they told me that the only information they had would just scare me.

On one hand, I think women today have it better because they can find out early if their child has Down syndrome. They have time to learn and prepare. But on the other hand, I think it would be much harder to have just a cold, hard medical diagnosis for all those months before birth.  For me, although I was frightened, my fears subsided whenever I had the chance to hold, cuddle, and kiss my baby.  I could see with my own eyes just how beautiful and perfect he was.

And when we brought him home, our love for him only grew deeper. Sadly, though, when we went for a follow-up checkup a few months later with Doctor Slam Bam Thank You Ma’am, he seemed only to want to diminish our joy. “Things may be going okay now,” he said, “but at some point Jason will plateau, but just love him anyway.”

I couldn’t believe my ears. That was the last time I would ever see that doctor again. How dare anyone, however educated, say such a thing! That shows you the mindset toward people with Down syndrome in 1976.

When you accept the cross God gives you, it turns into a blessing….

The siblings and their spouses.
(l- r) Erik, Andrea, Jason, Maritza and Chris.

I firmly believe this to be true. Jason has been a blessing to me, to my husband, to his brother, his sister, and our entire family. He is the love of my husband’s life. They go to breakfast. They go shopping. They are best friends. As my husband often says, “Maybe their life is the correct way, and we are wrong. I bet there would be no wars if a person with Down syndrome were running things.”

Sometimes people wonder if it is difficult for us. But honestly, the joys far outweigh the hardships. Jason is so much fun, and he is also so helpful. He cleans the kitchen and fills the dishwasher. He loves to vacuum. His room is neat as a pin. He has worked at Shoprite for 20 years and is a dedicated, hardworking employee who never wants to take a break and doesn’t even like having days off.  When he gets home from work, he always asks us if we missed him. “Yes, so much,” I tell him.

Jason has also been an altar server at our church for 20 years. He knows exactly what needs to be done, and everyone loves him. In fact, when a new pastor (Father Hank) joined our church years ago, he quickly felt an affinity for Jason. “God definitely brought me here,” Father Hank said, for he had had a sister with Down syndrome who had died two years earlier.

Finding GiGi’s and learning to read…

Playing Santa Clause for all of the kids at GiGi’s Playhouse!

With all of Jason’s many triumphs, there were still some areas for him to grow. Jason had attended McAuley School for Exceptional Children growing up. He did well there, but since the school focuses on teaching life skills, Jason never learned to read.

That all changed once Jason started going to GiGi’s when it opened in 2015. We found out about GiGi’s in a way that was meant to be—just like everything else about this journey. My husband was in a store when he saw a woman who had a little boy with Down syndrome. He went up to her and said, “You have the most wonderful experiences coming to you.”

Well it turns out, that woman was GiGi’s Playhouse Hillsborough president Erin Morris with her son Ben.

Jason has been participating in the GiGi’s literacy program for two years now. With the help and encouragement of his wonderful literacy teacher Carol Croll, Jason has learned to read! He is at a basic level now and keeps improving.

Jason also loves attending the Fantastic Friends and Cooking programs. At the annual gala, he is the last one off the dance floor. And just this year, he played Santa at the GiGi’s Christmas party.I cannot stress enough what a fabulous, wonderful change in the world Gigi’s has made for our kids! I remember shortly after Jason was born, my mom said to me, “God knew what he was doing when he sent Jason to you.”  I do thank God every day for Jason. And we also thank God for GiGi’s.